Admir Mehić, EHC Co-Opted Steering Committee Member
Bosnia and Herzegovina
[email protected]
Admir is a patient advocate with severe haemophilia A. He has been actively involved with the Hemophilia Society of Bosnia & Herzegovina (HSBH) since its establishment in 1998, starting as a volunteer alongside his parents. At first, he participated as a poster child for haemophilia, participating in the creation of various short documentaries and live interviews about his struggles and life with haemophilia.
Admir’s involvement evolved over the years, and he eventually became one of the younger members of the HSBH Executive Committee. In 2018 and 2020, he was elected as the Secretary (VP role) of his NMO, a role he continues to fulfil.
As part of the new leadership, Admir has brought new perspectives and a generational shift in thinking to his NMO, strengthening relationships with stakeholders and supporting initiatives like the establishment of the Federal Hematology Commission and the certification of the Center of Comprehensive Care at the University of Sarajevo. He continued a strategic partnership of his NMO with the Institute for Population and Development, together they advocated for the establishment of the Federal Rare Diseases Alliance. Learning quickly from EHC programmes he raised the activities of his NMO into a higher gear, supporting the more active involvement of non-hemophilia-related volunteers who bring additional expertise and out-of-box thinking.
Admir is happily married and currently works as a journalist. He brings a diverse skill set to the table, including his experience and background in politics as well as projects and social media management. He studied at the Department of Communicology at the Faculty of Political Sciences at the University of Sarajevo, earning a Bachelor’s degree in Communicology and Journalism. Currently, he is in the process of completing his Master’s studies in International Relations and Diplomacy. These educational and professional experiences make him a valuable asset to the field of haemophilia advocacy.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
